Monday, July 21, 2008

Life is truly flying again, and I am loving it!

Last week myself, Oli and some rather fabulous LLTGL helpers held a talk at the Treasury in Whitehall. It was a fantastic event, organised by their disability committee. We scooted up to London, with me saying “I’ll be a lot calmer when we’re at the station/on the train/at Whitehall/in the main room" at various intervals, each statement proving to be an utter lie.

I spoke first, about LLTGL, Transplantation, the statistics and the fears of waiting, and then introduced our guest speaker C, who bravely agreed to come along to tell the assembled what it was like watching your father wait and hope for a new heart. The audience was silent as she explained beautifully that the wait for transplant is like a washing machine – most people would say rollercoaster but that implies ups then downs whereas with a washing machine you are pelted with all these emotions at once (trademarked by C, Oli and I shall now be begging to steal said description). As she reached the end of her talk, the emotion of it all surfaced and she broke down, and I moved up to the mic to finish her speech whilst giving her a gentle squeeze.

I cannot even begin to explain how much more of an impact it has coming from someone who is living the situation right here, right now and we cannot thank C enough for being bold enough to stand up there and pour out her heart to a visually moved audience. The whole afternoon was just fantastic and we will hopefully have several more events stemming from it so watch this space...

One thing down, one very exciting thing to go: Cabaret Favourites is a mere two days away and I am now officially petrified! We had a full rehearsal on Saturday and the amount of talent we have in this cast is just incredible. Wednesday should be a fantastic evening; I am starting to get really rather panicky about singing on stage myself (not a good start when encouraging others to do so!) I keep having this fear I am going to cough in the middle and then remembering my new lungs don’t tend to do that...we will hopefully have some pictures which I can post after the big day.

Things have been so busy that I keep forgetting that a week today I shall be sunning myself (well sitting nicely in the shade smeared in factor 50) in much sunnier parts! I am going on my first proper summer holiday...2 weeks in gorgeous Greece. We are returning to a place we often went to as a family when I was younger, so I cannot wait to go back. When I had my tension pneumothorax and they were trying to stabilise me enough to move me to the Brompton, I apparently asked my dad to talk about our little haunt in Greece and describe it to me to keep me calm. I am so lucky to be able to go back, and I can’t wait to see what it is like now, this time with precious new working lungs.

Monday, July 14, 2008

Thank you as always for your wonderful comments and emails which always a) help me with my perspective and b) are just so lovely to read.

I went to Harefield on Thursday to see what was going on. All in all the appointment went well. Oxygen saturations were 100% (as the nurse said, can't get much better than that!) Lung function fantastic (tiny drop but not big enough to be of any relevance) Blood pressure etc all normal, X-ray was described as "pristine" (woohoo!)

Of course I can't leave a hospital without something being a slight cause for concern and it appears the latest organs to need an ASBO are my kidneys. They have been messing around intermittently and so the docs looked at the general trend over the year, which is essentially showing a slow decrease in function.

This sounded rather alarming to me but my consultant was fab, explaining carefully that it isn't any reason to panic at the moment, but does require further investigation to try and ascertain just what is causing their decline. The number one suspect is Cyclosporin, one of my immunosuppressants. In fact they are 99.9% sure this is the culprit, but as Dr C said, the one time you assume that's the reason is the time that actually it's a more concealed cause.

So I have all sorts of fun tests booked for August (a day out for me and my kidneys if you will) to triple check everything else and check that the big bad bully is indeed my Cyclosporin.

Progression if it is the Cylco? We can switch me to a different immuno which I don’t really like the sound of as it’s much newer (thus less known about it) and my lungs have been so very good (not a mention of the R word in sight) and as they say if it ain’t broke don’t fix it...but then I might not have a choice.

Anyway as my sisters pointed out, nice of me to pick a different organ to muck around with for a little while. They always have had an amusing way of looking at things...

Monday, July 07, 2008

Firstly massive apologies for not updating on the blood test thing - Kidneys are doing ok, the 2nd blood test showed a slight improvement so they are not too worried, although I will be returning to good ol' Harefield probably on Thursday.

It has been a tough week as I have had to realise a few things.

* Recovery from the actual Transplant is not the end. There's a myriad of other little elements which still need TLC along the way which will spring up when you least expect them.

* Working full time is a bit too much right now.

It’s been very hard for me to accept both of those points and therefore I have made the last week a little tougher for myself than it probably needed to be. I’m not very good at giving in or being defeated, I’m not very good at letting people down, and even though if I stopped and looked at it with an outsiders perspective the only person I am a) giving in to and b) letting down is myself, it’s still very hard.

Still the upside is my lungs are rather fabulous. Whilst I remember, massive congratulations to my middling sister Lucy who recently learned that she is a 1st Class Honours student and will shortly be heading into the world of journalism if her talent is anything to go by.

And how could I finish my blog without a plug for my very own project...some of you may remember a show I produced in 2004 entitled Cabaret Favourites. I loved it (always happiest when immersed in music and drama) but felt a little sad watching as really I wanted to be up there myself. I participated in the final number (by waving my arms around vigorously) but as the lights went to blackout I remember bending over, hands on knees, gasping and trying to regain my breath.

This year I will be debuting my new lungs as my sister has convinced me to get up there and sing a duet with her. I am totally over excited but incredibly nervous. Plus of course there’s a whole host of extremely talented young performers ready to sing their hearts out and create a musical spectacular in aid of Live Life Then Give Life. Want to see it? Come along: 23rd July at 7.30pm, email emily (at) livelifethengivelife.co.uk for more info and/or to book tickets. YAY!

About Me

29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy.
I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.